The Canadian MPS Society
An organization committed to supporting families affected with MPS and related diseases, educating medical professionals and the general public about MPS and related diseases, and raising funds for research.
The following are links to organizations that we have found informative or helpful. Please email me if there are additional links that you would like to see added.
The National MPS Society
The National MPS Society exists to support MPS research, to support families with MPS and to increase public and professional awareness about MPS. This is fantastic resource.
Hunter Disease eClinic
An interactive training resource in Hunter Syndrome. This website has the most comprehensive information on Hunter Syndorme I have ever seen.
MPS Forum
The Forum is a message board for families caring for a special needs child, specifically those with MPS/ML Disorders.
Shire Pharmaceuticals
Hunter Patients.com
An information and support page for families and friends of persons with MPS II, sponsored by Shire Pharmaceuticals.
The Isaac Foundation
Isaac is a young boy in Ontario who has MPS VI. After going through many of the struggles that we encountered trying to get ERT for Trey, Isaac began ERT on Sept 13, 2006.
The Ryan Foundation
Ryan is a an 18 year old boy in the USA. Ryan has had ERT (as well as other treatments) for the past six years, and enjoys a quality of life previously unimaginable for people with MPS I.
Canadian Organization for rare Disorders (CORD)
Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
The Sanfilipo Children’s Research Foundation
A family who began a foundation dedicated to research and raising awareness after their daughter was diagnosed with Sanfilipo or MPS III.
